COQ10

Ever since starting this blog there have been several times when I didn’t know what to write.  Well, more accurately, I know what to write, I just don’t know how to write it.  Today is such a case.  The most pressing & amazing news is that Kevin was approved to begin the COenzymeQ10 study tomorrow in L.A! (For those of you following the details, read on; the rest of you can skip this next paragraph)

Kevin has been excited about this new clinical trial from when we first heard about it in May.  It is a nonchemotherapy, high dose vitamin therapy that effects the growth receptors, targeting the fast growing cancer cells.  Kevin loves the idea that it attacks the bad cells, while causing no harm to the good cells.  The requirement to have a 30 day washout period from any chemotherapy or radiation has disqualified Kevin from starting the program again and again.  The doctors finally threw us a lollipop (I’m talking a 800 mg fentanyl lollipop figuratively) suggesting that maybe he could start the clinical trial after only a 14 day washout.  However, when we consulted the calendar, that put our starting date on Labor Day. The doctor’s solution to the problem:  Start the following week on September 12th.  (like taking candy from a baby!!)  So I put to practice an important lesson - it doesn’t hurt to ask.  So I asked.  “What about starting the week before Labor Day?”  I was quickly reminded that that would most likely not be acceptable from the FDA with only a 10 day washout period from Kevin’s last radiation . . but they would ask.  Two days later, Thursday morning, we received a phone call requesting a new CTscan and an appointment in L.A. to sign the consent forms to start the program THIS Monday.  See, it doesn’t hurt to ask.  Speaking of asking . . . .

So, Kevin has been approved to start the COQ10 study tomorrow, which is an answer to our prayers.  It’s difficult to explain the emotion of actually receiving something that you’ve prayed for for a long time . . .and then hoping that you’ve been praying for the right thing.  At this time, Kevin and I both feel like this is the right thing.  His recent CTscan did show cancer progression - in the past 3 weeks, the nodules in his lungs have grown, and there are now nodules in his liver.  Systemic therapy, such as the COQ10 study, is our best hope of slowing down the progression.

So off we go to L.A, and back, and L.A, and back. . .every day this week, then three times a week for the next month(s).  Tomorrow is an 8 hour infusion day so Kevin and I are going to spare ourselves the long drive and spend the night.  I know what you’re thinking - hot date night in L.A. Yep, me, Kevin, his dilaudid pump, and the 8 pillows he sleeps with over, under, and around him.  I won’t say there isn’t anywhere else I’d rather be; but I can say there is no one I’d rather be with.  It is going to be a challenging few weeks, and we hope and pray that Kevin will have the physical strength necessary to endure it.  We ask for your continued prayers on our behalf. . .remember, it doesn’t hurt to ask.

Genies in a Bottle

It has been eleven days since Kevin came home from the hospital, and oh, what a week it’s been.  Fortunately for us, our burdens have been made bearable by the people who have become an important part of our lives.  Remember wishing you could have a genie in a magic bottle to grant you all of your desires?  Well, we have TWO!  They go by the names of Suzanne and GG.  Suzanne is Kevin’s home health nurse, but really a genie is the better description.  Anything that Kevin needs - Poof! - Suzanne makes it happen.  Even things that Kevin doesn’t know he needs - Poof!  “Are you comfortable?” (Please read any quotations in the most charming English accent) Poof! A hospital bed, commode, shower chair, even the bedside table on wheels appears in our master bedroom and bath.  (I pulled Suzanne aside and told her we might not want to make the bedroom so comfortable that he doesn’t want to leave it!) “How is your pain?” Poof!  Suzanne makes phone calls to the oncologist,  the pain specialist, the pharmacy, but only after plumping Kevin’s pillow, covering him with a blanket, and placing a cool washcloth on his forehead. (I think I am to model her appropriate behavior - kind of like “super nanny” - whom Suzanne shares a close resemblance with) Suzanne brings with her an amazing arsenal of resources.  Every day is a different visitor - a physical therapist to teach Kevin how to flap his arms and march his legs, an iv nurse to draw blood to run labs from the comfort of his bed, and a social worker, who I think was pretty much there to make sure I hadn’t completely lost it.  (fooled her) Watching the magic of Kevin’s needs being met, I decided to throw something at her.  WIthin 24 hours I had an actual hard copy of a form allowing me to engage in exhilarating discussions with our health insurance on behalf of Kevin.  That was real magic.  My personal Genie is GG, also known as Grandma Gayle.  The great thing about GG is she knows all of the correct appearing and disappearing acts.  She makes all dirty dishes, laundry piles, unwanted tupperware, rattling washing machines, squeaking dishwashers, cluttered cupboards, and obnoxious weeds - disappear.  At the same time she makes delicious meals, needed grocery items, school supplies, and happy children - appear.  In the week that GG has been here I counted 15 trips she made to the soccer field to drop off Ben and Sam.  And almost as many trips to the tennis courts with Sophie. GG brings to our family a full bag of talents and tricks.  Josh and Sophie are especially grateful for GG’s unfeigned enthusiasm for mythology, The Great Gatsby, and US history (read = summer homework!); Sam loves GG’s willingness to work on puzzle after puzzle (after puzzle); and Ben scored when his mom allowed him to watch a PG-13 Harry Potter movie because GG said she would watch it with him.  A quote from Nanny McPhee was, “When you no longer need me, then I will be gone.”  If my mom adopted this quote she would never be able to use her return flight.  Maybe my dad will fly down and rescue her some day (I just hope it’s after the summer homework has been completed! ha)

An update on Kevin’s condition: The first week was crazy trying to manage the pain. Friday afternoon we finally turned in the Fentanyl patches and lollipops and upgraded to a dilaudid pump.  Twelve hours later we spent a lovely 2 hours (midnight to 2 am) with the oncall nurse trying to increase the new medication to a level that would decrease the pain.  I completely agree with Kevin that God must have a special place in heaven for nurses (especially those that come to your home at midnight, with their makeup on!) Kevin finished his final (10th) cycle of radiation on Friday.  I told him we are going to have to think of another date we can have every day at 2:30 pm. Just having a difficult time trying to think of something that would be enticing enough to walk down the stairs and allow me to drive him crazy with my driving.  SO, we now hold our breath, cross our fingers, and pray that Kevin can remain “radiation free” for the next 2-3 weeks so he can start the CoQ10 study in L.A.  Hoping for a miracle.  (I’ll get Suzanne and GG on it immediately)

Kevin's Home!

That’s the great news in the Hegewald home!  Although there have been a lot of comings and goings today in our family:

Today my nephew, Tanner, left to serve a 2 year LDS mission to Arcadia, California (Spanish speaking).

Today Kevin’s sister, Christy, and her husband and family moved to Munich, Germany to live for the next 2-3 years.

Today my dad flew home to Salt Lake City, and my mom flew here.

Today Kevin came home!  I just had to say that one again.

We love you & will miss you Elder Johnston, Christy, Bruce, Tal, Max, Olivia, Ashton, Boston, Ava, and Granddad - part of our hearts go with you.  (Our hearts are pretty big right now, so we have plenty to share) 

Just Business

This blog is just business.  It’s inspired by the books Benjamin has been reading this summer - “A Series of Unfortunate Events.” The first book is titled, “The Bad Beginning,” and the final, 13th book is titled, “The End.”  I was looking forward to reporting on our vacation to the Outer Banks (which started with a “bad beginning”) but thought I’d better just jump to “the end.”  

After two  weeks of watching Kevin trying to manage his pain, we decided to cut his vacation a few days short and fly Kevin and my dad directly home to California last Saturday, August 6th.  The car ride home from the airport ended at San Clemente Hospital where Kevin was admitted for pain control.  On Sunday, a blood test showed Kevin to be anemic, and a CTscan unfortunately showed innumerable, tiny nodules in both of his lungs.  On Monday, Kevin was transferred to Saddleback Memorial in Laguna Hills.  He could only endure 15 minutes of a 45 minute MRI, but the results provided enough information to confirm 2 spots where the bone is growing into the spinal canal.  These spots would definitely account for the horrific pain that Kevin has been dealing with in his right flank and his ribs.  They did the 1st session of radiation on both spots that same day, with 9 more treatments scheduled.  Today (Tuesday, August 9th) Kevin’s pain is under control, but some adjustments to medication will be monitored for the next 24 hours with the hope that he will be able to come home tomorrow.

Grateful Heart

Thank you to my brother-in-law Eric who truly made our vacation possible.  You are an amazing doctor, and an even better drug dealer.

Thank you to all of our Southern relatives for your amazing hospitality, and for those who traveled from far just to spend a few hours with us.

Thank you Mom and Dad for creating a magical vacation.  Mom, thank you for orchestrating every detail, and thank you both for raising a family that loves to be with one another.

Thank you to Darin and Susie Gilson who drove me and the kids from Salt Lake City through the night so we could get home to Kevin.  Darin, I will never forget your immediate and unhesitating response, “Let’s get you home.”

Thank you Rudi and Eva for willingly driving Josh to St. George to meet his high adventure group.  It’s where Kevin wanted Josh to be . . . and it’s where Kevin would like to be, too. 

Thank you to my ward family and neighbors for the jam packed fridge, freezer, and pantry, the meals, the folded laundry, and the most incredible welcome home sight of hearts and love and well wishes covering every inch of our garage door . . . and front door . . . and windows.  I can hardly wait for Kevin to come home and see it.